I have a neurology appt next week @ Brigham and Women's. I made it 3 months ago but have acutally improved since then but my PCP would still like me to keep the appt. I don't have high hopes. Just wondering if anyone else has been there?
Of the Lahey? no appt there, just curious
Posted by Cold Feet (Member # 9882) on :
Well, look at my signature! Lahey continues to turn away patients who have Lyme disease and other bacterial diseases.
They've even turned away patients that have an EM rash -- without diagnosing them or treating them.
No worries, they made more than $26,000,000 last year...businesss as usual.
Posted by alliebridge (Member # 9103) on :
Three and a half years ago I saw a neurologist at B&W. It was a COMPLETE and UTTER waste of my time and my energy!
I was sent by my PCP who had diagnosed me with Lyme. The neurologist was lazy (had a better neuro exam with my LLMD) and haughty and told me it could not be neurological Lyme because he had never seen it!
Two weeks later at my first LLMD appt. he diagnosed me with Neurological Lyme Disease. Go figure!
The doctors in Boston are THE WORST when it comes to Lyme Disease.
Posted by swachsler (Member # 18155) on :
I'm afraid I've had bad experiences at both places, but then it's hard to find a medical locale in the greater Boston area where I did NOT have a bad experience.
And that was all pre-Lyme!
I think Lahey is good if you have some sort of fancy or commonplace surgical procedure to be done on you. Anything that's more subtle than a bone sticking out of you, I'm dubious.
B&W got a really bad rep in certain circles about 15 years ago for being a sick building and causing many nurses to become permanently disabled due to chemical injury.
They have cleaned up their act in a lot of ways. But they also have docs practicing there who get their research money from the co.s that make breast implants (and shockingly, their data show that silicone implants are not dangerous!).
So....
Maybe there is someone good at a Boston hospital, Lyme-wise, but if so, I've never heard of them. The only good Lyme docs I've heard of in Eastern Mass., are not affiliated with any hospitals.
If you have toxicity or respiratory issues, Dr. Hu at Mass. Respiratory in Quincy is highly respected, and a good doc. Though, I have no idea if he knows anything about Lyme or not.
Sorry I can't be more helpful. Considering Boston's rep for "the best teaching hospitals in the country" and "the best medical care in the world," etc., it's really pretty appalling what goes on there.
-Sharon (escapee to W. Mass., where the health care ain't great, either, but at least the egos aren't quite so inflated.)
Posted by purplemom (Member # 21064) on :
Thanks for sharing. I am prepared for a useless appt but still will keep an open mind.
Over the summer I collapsed and had leg weakness and spent 3 months in physical therapy. It is better and my word displacement issues and other "neurological" issues have calmed down.
I just finished reading "saving sammy. the boy who caight ocd" ( he got it from a strep infection) his mom had taken him to a pediatric neurologist in Boston who said it absolutely could not be from a strep infection. She did research and fought hard and got her son the right treatment from a doc in NJ and he recovered.
I feel strong enough and smart enough now to know that doctor's have opinions which I can consider but really they are just "practicing" medicine.
Posted by lou (Member # 81) on :
When people go to places known for lyme ignorance and arrogance, they should be careful about giving out information about lyme doctors who are treating them, and how they are being treated. This has been used against lyme doctors. Also, if they ask you to bring previous testing results which have a doctor's name on them, black out the doctor's name if he/she treats lyme. A number of lyme doctors have been reported to state medical boards by other doctors, for the sole reason that they recognize and treat chronic lyme. So, be careful.
If any non-lyme literate neurologists (just about all of them) are going to do tests that characterize and describe the neurological deficits, that might be useful, especially if your lyme doc needs proof that these exist. So, get copies of any testing done for yourself. You might have better luck if lyme is not even mentioned to the neurologist.
And BTW, someone from Lahey clinic has made blatant statements about the non-existence of chronic lyme, can't remember his name but he was chosen by the IDSA to be on the guidelines review panel, for obvious reasons.
Posted by purplemom (Member # 21064) on :
Lou, If you remember his name I would like to know.
Thank for the tip.
If anyone else has any experience with Lahey pr Brigham and Women's let me know here or PM me.
Posted by massman (Member # 18116) on :
Good advice, lou.
Posted by coltman (Member # 21272) on :
can any of you guys recommend a neuro in MA? - I want do MRI and peripheral nerve testing (whatever it is called)
Posted by amkdiaries (Member # 7035) on :
Went to the Lahey clinic in 1997 and was told by the infectious disease specialist that an extended vacation would take away my symptoms. He advised me in person and inwriting not to take any antibiotics.
As a result of this diagnosis here I am 12 years later with triple the amount of symptoms. He supposedly came from the Mayo clinic and thank god I didn't waste my time and money there.
Posted by purplemom (Member # 21064) on :
What are the side effects that he was so concerned about? Did he see them in patients or just in theory?
A friend went there and she was told the antibiotics caused and immune system reaction?!!
Posted by 22dreams (Member # 17846) on :
quote:Originally posted by coltman: can any of you guys recommend a neuro in MA? - I want do MRI and peripheral nerve testing (whatever it is called)
Yes, but the neurologist is not taking new patients. I would like to get in to see this dr. as well.
I had asked Dr. L if she knew of any remotely lyme-friendly neurologists so that I wouldn't have to deal with the invalidation extravaganza, and she had said that there aren't any in Mass--at least around here.
I do know of one in western Mass that may be a possibility but this one likes to see that everything possible is done on the infectious disease treatment side of things (and any progress) before she takes on a new patient.
I'll find the info and PM you.
Posted by cordor (Member # 9449) on :
I went to Brigham & Women's last July to see the a Neurosurgeon (male) and Endocrinologist (female)at the Pituitary and Brain Tumor center. I have a pituitary tumor....and several endocrine abnormalities. They both took the "let's just watch and wait" direction...for now. So drove 5 hrs from NJ to MA for pretty much nothing. They were nice doctors, but had nothing different to offer than docs here in NJ and NYC.
Posted by purplemom (Member # 21064) on :
My thought is not to walk in the door and insist I have neurological lyme but rather to explain the events of this year and what happended to me and yes part of it is that I sought treatment for lyme and I will continue treatment. It appears my LLMD is right but I want to have someone else review my records as well.
![[Roll Eyes]](rolleyes.gif)